The institutions quickly retooled – they were not institutions any more but the “Caretakers” and they quickly equated the appropriate settings as all inclusive Caretaking settings. This didn’t go unnoticed and

We begin with a quote going back to 2009 from Keeping the Promise: Self Advocates Defining the Meaning of Community Living – by ASAN [then still a fledgling organization]:
“In June 2009, the Centers for Medicare and Medicaid Services (CMS) announced they would be publishing regulations defining the character of home and community-based settings. CMS acknowledged that, ―some individuals who receive Home and Community Based Services in a residential setting managed or operated by a service providerhave experienced a provider-centered and institution-like living arrangement, instead of a person-centered and home-like environment with the freedoms that should be characteristic of any home and community-based setting. CMS stated that using such settings to provide ―home and community based services are contrary to the purpose of the 1915(c) waiver program.
The purpose of this paper is to provide CMS with a definition of “community” that captures the most vital elements of community life. In addition, we believe that these comments are important contributions to policy issues in the areas of housing, education, employment and transportation. “

This paper delivered a decisive and noteworthy declaration of what Community Living is – it defined what it must be and what it can’t be. It was a demand for unabridged uncompromised freedom of our people. Importantly it included this – “We must be free to come and go”.

And now another 10 year later we have ASAN [now an established party at the table] collaborating with whoever to compromise THESE FREEDOMS on our behalf [The Best Outcome We’ve Had”: Key Themes From A Self-Advocate Summit On Community Living]. Out goes the FREEDOM, replaced by AUTONOMY [38 times] – and the ‘caretaking’ industry gets what they want – the ‘settings definition’ that keeps our people locked.

Here is the citation from the latest legislation defining the community living in positive terms that is apparently in agreement with ASAN:
“Each individual has privacy in their sleeping or living unit: — units have entrance doors lockable by the individual with only appropriate staff having keys”.

To make it clearer why this phrasing is flawed let us make a comparison with a jail – prisoners may be allowed to lock themselves in a cell, while guards are having a key to open it. Note that prisoners are not provided with a key to open the cell nor do they have a key to the prison door!

These rules apply to all settings funded through the major Medicaid HCBS programs. This includes settings funded through 1915(c) waivers (generally known as “waiver programs”); state plan home and community-based services offered through 1915(i) and the 1915(k) Community First Choice state plan options; 1115 demonstration waivers; and HCBS provided under 1915(b)(3) managed care programs

This definition allows an institutional lockup and this what currently is happening to our people in ‘Communal Settings’!

Yet this is not an exception for new ASAN; the new policy both simple and plain is sugar coated with generalities that amount to “Nothing about us with us”.

terms

This was an annihilating condition that

A bit of important History: The movement of institutionalized people into community began shortly after the horrific exposes [Willowbrook and other] in 1970s. The movement was initiated by savvy opportunists who saw it as a gateway into a profitable venue of ‘caretaking” and it was quickly followed by the institutions themselves who didn’t want to loose any part of their business. Moving into community allowed them to put a new face on their operations thus deflecting the governmental scrutiny and public discontent while at the same time maintaining and even increasing their profits.
It took some 30 years for the Disability Rights movement to make a dent; it came with the Olmstead v. L.C. decision in 1999 which ruled that people with disabilities have a “qualified right to receive state funded supports and services in the community rather than institutions” – yet subject to the loosely specified limiting conditions. These conditions – “the most integrated setting appropriate to the needs of qualified individuals with disabilities“] – provided the ‘caretaking’ industry with the loophole to keep ‘people with IDD’ institutionalized in the midst of community, as this was convincingly argued was the “appropriate for them settings“. A great number of them were Autistic people, and these numbers were growing.
Another 10 years later the fight for them began in earnest, and much of the credit for that goes to ASAN.

This movement however was resisted by the stigmatized community, and this eventually went all the way to the Supreme Court and led to an infamous Supreme Court decision [in Cleburne vs. Cleburne] – where the business operator argued for the rights of their clients [Mentally Retarded as jargon was those days] citing their need for an inclusive life in the community, while simultaneously assuring the Court that these people will be under a constant (24/7) surveillance and would not in any way affect the communal life.

As one would expect they have won based on the ‘rationality’ of their endeavor [rationally related to a legitimate state interest], while the Court in a ‘double whammy’ simultaneously declared that Mentally Retarded and more generally the Disabled are not subject to a ‘higher scrutiny’ just because they are uniformly and rightfully so are denied the full rights of normal people.

This Supreme Court decision that still governs today had paved the way for institutions to move into Communal Settings, while at the same time “it has been nearly uniformly applied to deny people with disabilities any protection under the Equal Protection Clause.” The movement was initially embraced by the States, but it cooled off due to increased mortality of inmates and the abuses that were hard to control.

Nevertheless this was an important development, and there the advocate movement for the rights of disabled people to return, and also to remain in Community, and the fight for their human rights has begun.

It is important to note that the Supreme Court decision was not unanimous, with Justice Marshall [not surprisingly an African American] dissenting – and effectively stating – “that due to the history of discrimination against the intellectually disabled, the Court should employ a higher standard of scrutiny when examining laws that regulated those with mental disabilities”. WE HAVE YET TO ACHIEVE THIS STANDARD!

Some 10 years later came the much heralded [by both the advocates of today and the modernized institutions] the Olmstead decision. It ruled that people with disabilities have a qualified right to receive state funded supports and services in the community rather than institutions – yet subject to the loosely specified limiting conditions. This loose language – “the most integrated setting appropriate to the needs of qualified individuals with disabilities“] – provided the ‘caretaking’ industry with the loophole that choked the movement and kept ‘people with IDD’ in the “appropriate for them settings“. These settings on a surface were all about integration into community, employing all the right words of the advocate movement while behind the covers they continued to be the old good institutions where the abuse and the denial of human rights continued to thrive.

A Modern Background – from Keeping the Promise: Self Advocates Defining the Meaning of Community Living – by ASAN:
“In June 2009, the Centers for Medicare and Medicaid Services (CMS) announced they would be publishing regulations defining the character of home and community-based settings. CMS acknowledged that, ―some individuals who receive Home and Community Based Services in a residential setting managed or operated by a service provider have experienced a provider-centered and institution-like living arrangement, instead of a person-centered and home-like environment with the freedoms that should be characteristic of any home and community-based setting. CMS stated that using such settings to provide ―home and community based‖ services are contrary to the purpose of the 1915(c) waiver program.

The purpose of this paper is to provide CMS with a definition of “community” that captures the most vital elements of community life. In addition, we believe that these comments are important contributions to policy issues in the areas of housing, education, employment and transportation. “

This paper was a decisive and noteworthy declaration of what Community Living is – it defined what it must be and what it can’t be. Importantly it included this – “We must be free to come and go”

We begin with a quote from ADAPT – the organization with a courage and resolve that led our society to Widen the Doors – and let THE WHEELCHAIR REDEFINE OUR CULTURE! –
“There are over 2 million people with disabilities of all ages in nursing homes and other institutions;  

These settings and

“We must be free to come and go” in ASAN’s

Keeping the Promise: Self Advocates Defining the Meaning of Community Living